Kasey Reamer, 14, loves snowmobiling, archery, hot pink and sleepovers with her best friend.
“She wants nothing more than to be normal, like everybody else,” said her mother, Julie Reamer.
But Kasey’s quest for a “normal” life has faced more challenges than most people encounter in a lifetime. Born with Goldenhar Syndrome, a rare birth defect, Kasey is deaf, blind in one eye, and has a fused spine and only partial jawbones. A doctor told her parents she’d never walk, but Kasey proved him wrong. She’s undergone more than 20 surgical procedures and uses a tracheal tube to help her breathe.
“She’s the toughest person I know,” said her father, Paul Reamer, recalling the time Kasey was running the halls of the intensive-care unit just six hours after major surgery.
That irrepressible spirit made Kasey an immediate choice when the staff at Children’s Hospitals and Clinics of Minnesota was asked to recommend a deserving child to receive a bedroom makeover via Special Spaces, a Knoxville, Tenn.-based nonprofit with a new chapter in the Twin Cities.
“Kasey is awesome. Her whole life, she’s had a positive attitude, instilled by her parents,” said Jeri Kayser, a child-life specialist at Children’s Minneapolis campus. “A lot of kids in situations like that hit roadblocks, but Kasey is always ready to try one more thing, with that can-do attitude of hers.”
Special Spaces’ mission is to provide dream rooms for kids with life-threatening illnesses, to give them a comfortable, inviting place to recharge and recuperate. “Emotional state is really important when healing,” said Chelsey Green, director of the Minneapolis chapter.
And families that have kids with continuing medical challenges often don’t have surplus cash for decorating projects, Kayser said. “It’s really hard on families financially. Any extra resources are plugged into the child’s health care.”
Kasey, who attends the Minnesota State Academy for the Deaf in Faribault, Minn., got her dream room one Saturday last month, when a dozen volunteers converged on the Reamers’ home in Prior Lake to transform her small bedroom while she and her family were at the Como Park Zoo.
“She likes tie-dye and peace signs,” said Green, who created a design after viewing colorful curtains contributed by Kasey’s grandmother, then consulting with Kasey and her parents. Relatives, friends and co-workers assembled furniture, installed shelving and hung artwork.
Kasey’s new room reflects both her practical needs and her personal tastes. There’s a new trundle bed for sleepovers, a new desk and a light-sensitive fire alarm (Kasey can’t hear a conventional smoke detector) “for her safety and the family’s peace of mind,” Green said. There are also lots of teen-friendly decorative touches, including bright-colored accent pillows, a K-shaped display holder for Kasey’s sizable earring collection and a Lava Lamp.
Green volunteered to launch a local chapter of Special Spaces after seeing the nonprofit featured on the reality show “Secret Millionaire.” The mission immediately appealed to Green, a designer/store planner for Target Corp. who enjoys volunteering in her free time. “I can design a bedroom and help people. It struck a perfect chord,” she said.
Kasey’s bedroom makeover was Special Spaces’ second project in the Twin Cities, and a third candidate has already been identified: a 14-year-old girl in Eagan who has an extremely rare chromosomal abnormality. She’ll get her new room once financing and volunteers have been lined up. (The average makeover costs about $3,000, and most items are donated.)
Green’s team of volunteers for Kasey’s makeover included her dad, Gary Green, who came from Hartland, Wis., to help out. “I wouldn’t miss it. You feel good at the end of the day,” he said.
Lindsey Robinson of Minneapolis, who works with Green at Target, also pitched in, mostly hanging decorative items. “They’re small things that make a big impact,” she said.
After several hours, the transformation was complete, and it was time for the big reveal, just like on a TV home-makeover show. Volunteers watched eagerly as Kasey, her parents and her twin brother, Ryan, returned from the zoo for a first look at the room.
Kasey’s face lit up, and she gave Green an enthusiastic hug. “I’m so happy you like it,” Green said.
As Kasey took in the details, she alternately kissed her mother and Green — pausing to bop her brother with one of her new hot-pink accent pillows.
Her favorite thing about the new room? “The soft bed,” she said in sign language via her mother, who served as interpreter.
“This room is like a reward to her,” Julie said. “She’s been through so much. This is something normal, something that’s hers, not something Mom found at a garage sale. I couldn’t give her this.”
A few weeks after the makeover, Kasey was making good use of her new trundle bed, according to Julie. “It’s been great! She’s had a couple sleepovers. They had a blast.”
Kasey is eager to show off her new room when people visit. “Her grandparents were here, and it was, ‘C’mon, you’ve got to see my room,’ ” Julie said.
And now, with ample storage space for Kasey’s stuff and a new incentive to keep her room looking its best, there’s been an unexpected side benefit — one that any mom of a teen can appreciate: “She is actually keeping her room clean now.”